Parents of 10-Year-Old with Rare Condition Made Her Final Weeks Count: We Said 'Let's Have Fun'

“I thought we had at least a year–I really did. We had more adventures scheduled,” the 38-year-old mother of three tells PEOPLE.

In January, Weaver and her husband Mark, 49, made the excruciating decision to stop taking extreme measures to prolong their daughter’s life. They were heartbroken when she suddenly got very sick and died last month.

“She was in hospice here at the house and we’d promised her we’d never take her back to the hospital. I crawled into bed with her and I was holding her, curled up next to her and that’s when she took her last breaths.”

Ten-year-old Sophia was born with extreme facial, hand and foot deformities and Rett syndrome—a rare degenerative disorder that meant she couldn’t walk or talk, had trouble eating and sometimes even breathing.

Sophia had endured 30 surgeries over her lifetime and when she went into respiratory failure after her last surgery earlier this year, her parents decided enough was enough.

“It was probably the most difficult decision we’ve ever had to make in our lives. I knew I had to listen to her body.”

In addition to keeping her out of the hospital, they decided to bring her out in public—for the first time in years. “People had always been so cruel, they called her a monster and her immune system made it difficult.”

In recent months, the family brought her to a hair salon for the first time. They went to an aquarium, an art museum and even saw a movie in an actual theatre. They also took her roller skating.

“She smiled the whole time. We had told her, ‘Let’s have fun for the rest of your life!’ I told her no more doctors, no more hospitals. And even though she could barely talk, when we told her that, she said, ‘all done?’ “

Sophia and her mother gained a national following when Natalie began to advocate for kids with disabilities and the need to protect pre-existing conditions in insurance plans. President Obama even tweeted at Natalie championing her activism. Natalie also convinced Twitter to change their hate speech policy regarding people with disabilities after people used her daughter’s picture to advocate for abortion. (She says she is currently working with Instagram to do the same.) So when Natalie told her thousands of followers about “Sweet Sophia’s Adventures” many responded with suggestions and donations. Winnebago even offered the family one of their giant vans to take Sophia out West on the ultimate family road trip.

Sadly Sophie died before they were able to take the vacation, but Weaver says the company has agreed to let her and Mark take their other kids—Alex, 8 and Lyla, 5—on the trip. “Our family is going live out this last promise to Sophia—she will be with us in spirit.”

She says Sophia lives on in the non-profit the family started, Sophia’s Voice, which helps other kids with disabilities and their families. In just the last year they’ve worked with 50 families to help pay for medical equipment and supplies, even car and utility payments. When Natalie announced Sophia’s death on social media, followers raised more than $40,000 for the non-profit in just a few days.

“I’ve received messages from people all over the world saying Sophia gave them strength. I wish I had more time to change the world for Sophia and people like her. There is still so much hate and cruelty towards people with deformities and disabilities, and for a few brief moments I’ve felt like I’ve made an impact and I hope my daughter’s proud of me, but I wanted to do more … I wanted her to be here to see the world be more accepting and change for the better.”

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